Los Angeles Times - 25.08.2019

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C6 SUNDAY, AUGUST 25, 2019 WST S LATIMES.COM/BUSINESS


“Putting thousands of dol-
lars on the table only com-
pounds the problem,” he
said in his veto message,
concluding pointedly: “Not
everything in life is for sale,
nor should it be.”
The proposal resurfaced
in 2016 under Burke’s spon-
sorship but died when
Brown signaled that he
hadn’t changed his mind.
Now, with a new governor in
Sacramento, the propo-
nents are trying again.
Burke’s bill, Assembly Bill
922, passed the Assembly
without a single “no” vote in
May and the Senate Health
Committee on June 20, by a
6-1 vote, so it’s likely to pass
the Senate handily. Gov.
Gavin Newsom thus may be
the only person standing in
the way of it becoming law.
Newsom’s spokesman,
Nathan Click, says the
governor doesn’t weigh bills
until they reach his desk.
This one would put Cali-
fornia women, especially
low-income women who
may be especially desperate
for the compensation, at
risk. He should kill it.
Let’s examine why.
Although proponents of
the bill defend it with the
gender equity argument, in
reality it’s about supply and
demand: Researchers have
trouble obtaining human
eggs if they can’t pay for
them. The market is grow-
ing fast because eggs are
used today not merely for
research on infertility but in
stem cell and genetic engi-
neering laboratories and
firms.
At stake is not the fertil-
ity industry, where women
are routinely paid for strik-
ing private and legal deals.
In question is the growing
demand for egg donations
that are “taking place in the
biotechnology market, and
it’s largely profit-driven,”
says Lisa Ikemoto, a bio-
ethicist at UC Davis. “The
types of protections we have


for human subjects haven’t
taken that into account.
People who are not doing
things like having drugs
tested on them, but are
providing cells and tissues,
are not the kind of human
subjects the laws were de-
signed to protect.” As de-
mand continues to grow, she
says, those participants’
“financial need may over-
come their sense of self-
protection.”
As was the case in 2016,
scant research exists on the
long-term health risks of egg
retrieval. Nothing in the bill
would encourage more.
There’s no funding, for
instance, for a research
program, or even to create a
database of egg donors so
their health can be tracked
over time.
What is known, however,
is that egg donors have been
advised consistently that
the medical risks of the
procedure are low — they’re
told that only 1% experience
ovarian hyperstimulation
syndrome, or OHSS, a
condition that can befall
women who take fertility
medication to stimulate egg
growth, as egg donors must
do.
Diane Tober, who re-
searches egg donors at UC
San Francisco, said that
figure may severely under-
state the prevalence of
OHSS. She says studies
suggest that 3% to 6% of
donors may experience
severe OHSS at some point.
“The research still needs to
be done,” she says. “We still
don’t have a lot of informa-
tion on the impact on wom-
en’s health of egg donation
either immediately or in the
long term. But I’m seeing a
much higher risk of compli-
cations than what’s re-
ported in the literature.”
In other words, assur-
ances that the procedure is
safe are based on a lack of
knowledge. The procedure
is not simple. Consider the
experience of Katie O’Reilly,

an Oakland magazine ed-
itor who underwent the
procedure in 2009, at the age
of 25, because she was broke
and needed the $8,000 fee
paid by a fertility clinic on
behalf of a couple trying to
have a child. “If I’d known
then what I know now,” she
wrote in a 2015 article for
BuzzFeed, “I wouldn’t have
done it.”
The routine for O’Reilly,
which is standard, required
her to self-inject hormones
twice a day for up to two
weeks to stimulate egg
production, along with
another hormone to stave
off ovulation until her eggs
could be harvested. Then
her eggs were harvested by
needle under general anes-
thesia. “They said there
were virtually no risks,” she
told me.
After the procedure,
O’Reilly experienced multi-
ple medical problems —
endometriosis, fibroid
breast tumors requiring
biopsies, painful menstrual
cycles. She’d been healthy
before, but her doctors are
loath to connect her subse-
quent conditions to her egg
donation. “They just say
there’s no way of knowing,”
she says. Nor did the fertility

agency that recruited her
show much concern, though
it had been extremely solici-
tous prior to the harvesting.
“It was about making sure
they got the goods, and after
that point, you’re sort of
dispensable.”
The sponsor of AB 922,
the American Society for
Reproductive Medicine,
glosses over that aspect of
the matter. The ASRM’s
pitch to legislators bristles
with irrelevancies and mis-
leading claims. A letter the
association sent May 30 to
Sen. Richard Pan (D-Sacra-
mento), chairman of the
Senate Health Committee,
asserts that women are
“capable of informed deci-
sion making as to the risks
of compensated participa-
tion in research,” as if the
ban on payment is just
another form of paternal-
istic condescension.
The letter says that
“fairness” requires that
women be compensated
just like men providing
sperm for research. It says
that the ban on compensa-
tion embodied in Pro-
position 71, which created
the California stem cell
program, was based on
“claims that ovarian stimu-
lation is carcinogenic,” and
compared those claims to
assertions that abortion
causes breast cancer or
vaccines cause autism.
Those comparisons to
definitively debunked
claims about cancer and
abortion and vaccines and
autism are unworthy of any
self-respecting research
organization. There are
many open questions about
the short-, medium- and
long-term health conse-
quences of egg harvesting,
including the effect on a
donor’s reproductive sys-
tem and fertility. Although
some studies have been
reassuring about the carcin-
ogenic effects of the pre-
donation hormonal treat-
ments, the issue is by no
means closed, as a 2014
scientific survey reported.
Nor can the egg donation
procedure be compared
with the process of harvest-
ing sperm. At the risk of
seeming indelicate, it
should be obvious that
unlike egg donors, under
normal circumstances,
sperm donors don’t have to
undergo an invasive surgical
procedure or self-adminis-
ter daily injections of hor-
mones.
The ASRM and Burke
both treat egg donations for
research and donations to
help couples achieve fertility
as essentially the same.
They’re wrong. California
doesn’t regulate payments
to donors for fertility treat-

ments, including those of
strangers, because they
tend to be private contracts.
But it does subject research
on human subjects to strict
standards requiring in-
formed consent from the
participants and discourag-
ing blandishments that
could lead people to agree to
procedures that are not in
their best interest.
“The process of asking
people to provide any kinds
of cells and tissues for pay-
ments depends on income
inequality,” Ikemoto says.
“In the egg market, it de-
pends on race inequality as
well — most people who are
screened for eggs in the
fertility market are white
because that’s where the
demand is. In the research
setting, that may be differ-
ent. That’s a serious con-
cern.”
ASRM and Burke make
much of the fact that Cali-
fornia is one of only three
states that ban payments to
those who donate eggs for
research (Massachusetts
and South Dakota are the
others). But the National
Academy of Sciences op-
poses payments for egg
donors beyond direct ex-
penses in stem cell research,
so that financial incentives
won’t interfere with donors’
voluntary consent. (The
NAS opposes payments for
sperm donors too.)
Financial incentives
appear to be the key to
attracting donors, which
should give pause to sup-
porters of the legislation.
“It’s clear that money is the
primary incentive,” says
Emily Galpern, a consultant
for the Berkeley-based
Center for Genetics and
Society, which opposes the
bill. “When anyone tries to
recruit donors without
payment, women won’t do
it.”
Burke told me that she
has undergone egg harvest-
ing four times for her own
fertility treatments without
problems. “You’re telling me
that I don’t have the deci-
sion-making ability as a
grown woman to make this
decision for myself?” she
says. “I don’t buy it.”
Yet one of the impera-
tives of government, includ-
ing the government of which
Burke is a member, is to
protect people from being
enticed into making deci-
sions without enough infor-
mation to protect them-
selves. How can any woman
give informed consent to a
procedure in which there’s
so little information about
the consequences?
Burke told me, “there’s
very little data to show that
this process has any detri-
mental effects.” But that

won’t do. Burke’s personal
experience is hardly the last
word, and in fact there are
enough reports of possible
detrimental effects to gener-
ate professional calls for
more studies. The reason we
don’t have more data is that
not enough research has
been done.
Burke could do egg
donors a solid service by
rewriting her bill to man-
date and fund studies of the
effect of the hormones that
must be taken by donors.
The research community
has been widely criticized
for gender bias — both for
inadequate funding on and
inadequate attention to
medical issues affecting
women; this would be an
opportunity to help redress
the imbalance, at least in
this one field.
Burke also should insert
real medical safeguards for
donors. Burke’s bill requires
that research sponsors
provide donors with “cov-
erage for medically appro-
priate medical care that is
required as a direct result of
the procedure.” But the bill
doesn’t define what care
would be “medically appro-
priate” or “a direct result of
the procedure,” or say how
long the coverage should
last. Burke told me she’s
content to leave that to the
judgment of the institu-
tional review board, or IRB,
overseeing the research.
But that’s cold comfort
for donors. IRBs at cred-
itable research institutions
may act responsibly, but it’s
not uncommon for fly-by-
night IRBs to offer their
services for hire or even for
researchers to set up them-
selves as an IRB.
Even at big universities,
research funds are scarce,
so they may have an incen-
tive to keep their healthcare
commitments to egg donors
narrow to save money.
What’s to keep them from
saying: “Your endometri-
osis? Not our problem.”
Specific coverage require-
ments should be part of this
measure.
The truth is that the egg
donor market is an unregu-
lated Wild West, and it’s only
going to get wilder if limits
on payment to donors are
eliminated. Asked what
advice she would give pro-
spective egg donors, O’R-
eilly says: “I would tell them
to look into all the anecdotal
evidence they can find, and
not take at face value what-
ever they’re being told.”

Keep up to date with
Michael Hiltzik. Follow
@hiltzikm on Twitter, see
his Facebook page, or email
michael.hiltzik
@latimes.com.

Weighing risks,


fairness of paid


egg donations


THERE AREmany open questions about the short-, medium- and long-term health consequences of egg
harvesting, including the effect on a donor’s reproductive system and fertility. Above, a Toronto fertility clinic.

Keith BeatyToronto Star

A WOMAN’Segg is fertilized in 1988. In California, it’s illegal for researchers to
compensate women for their eggs beyond reimbursements for direct expenses.

Yvonne HemseyGetty Images

[Hiltzik,from C1]


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